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The Ketogenic Diet for Treating Epilepsy: What You Need to Know

https://charliefoundation.org/ Nearly one century after the ketogenic diet was developed as a successful treatment for epilepsy at the Mayo Clinic, progress in acceptance and implementation has come so slowly. Though study after study has shown the same effectiveness no matter when it was done or which country it was trialed in, 100 years after its inception, the ketogenic diet remains drastically underutilized. Let’s explore for a moment just what “underutilized” means in this context. Today there is a world epilepsy population of around 60 million people. Going back to then 1920’s all the published data from different doctors at different hospitals in different decades with similar patient epilepsy populations document remarkably similar outcomes: at least 50% seizure reduction in over half the people with epilepsy who try the diet, with 15-24% attaining seizure freedom. Of the 30 million people with epilepsy worldwide who would improve significantly by using a ketogenic diet, 29,995,000 people are suffering unnecessarily. Extrapolate those numbers back to the 1920’s when the diet was developed and the amount of human tragedy is unfathomable. Today the myths that for decades were used to talk physicians and their patients out of the diet for epilepsy have all but been dispelled. When administered properly, the diet is safe, it does not cause cardio vascular disease, it does not stunt growth, it’s mechanisms are largely understood, the meals are delicious, the most prevalent adverse effects are easily prevented, the risk is minimal and the probable reward is at least 50% seizure reduction. Nor is the diet too difficult to maintain—especially when compared to a lifetime of seizures, drugs, invasive techniques and progressive retardation. So why are so many who would benefit from a ketogenic diet for epilepsy still without this treatment? Why did it take nearly a century for this meeting to happen? I’ve spent a good part of the last 25 years of my life working on that one. Here is what I’ve learned. -There are pharmaceutical and medical device industries that make billions of dollars annually from anti-epileptic drugs and devices that have enormous influence on what doctors are taught and prescribe; -There is a medical community that is virtually oblivious to nutrition and diet therapies. I ask any physician in this audience how much of his medical education was devoted to these subjects. A week? A lecture? -There are sugar and processed foods industries that make additional billions by adding sugar to pretty much all of the processed foods that shape most of global nutrition. Certainly they have no interest in promoting a diet that all but prohibits sugar; -There is a cardiology community led by the American Heart Association in the United States that has demonized fat based on flawed science for the past 70 years; -There is an insurance industry in the Western world that will not reimburse hospitals for trained Ketogenic Diet nutritionists, but are perfectly willing to reimburse for drugs, surgeries, hormone therapy and devices; -There are hospital systems that evaluate medical protocols based on revenue flow rather than efficacy. Hospitals profit handsomely from tests, invasive procedures, devices and medications, but make no money from Ketogenic Diet Therapies. Twenty five years ago my son Charlie was suffering multiple daily seizures, multiple adverse reactions from anti-epileptic drugs, as well as multiple effects from a failed brain surgery. Even back in 1993 the evidence was overwhelming that the diet was not only the best treatment option for Charlie, but that there was less than a 1% chance another drug would work. My whole family was devastated. Yet not one of the 6 pediatric neurologists he had seen told us about the Ketogenic diet. Then I did my own research and came across, among other evidence, Johns Hopkins paper published in Epilepsia in 1992 just a year earlier documenting seizure freedom in 29% of 58 consecutive children who were as sick as Charlie when they tried the ketogenic diet. We traveled to Johns Hopkins and initiated the therapy. Charlie’s seizures disappeared in a couple days. He was off all four of his medicines in a month. He was on the diet for five years. Today Charlie is a happy 26 year old school teacher who boxes, plays piano and eats whatever he wants. He has never taken another anti-epileptic drug. He has never had another seizure. I know how it feels to see my child and my family suffer unnecessarily because his health care providers were influenced by factors other than Charlie’s good health. It is my most fervent wish that all of you can recognize the lessons of history and that you will take ownership of your role in providing ketogenic therapies for your patients as soon as medically appropriate. Click for more info on the ketogenic diet    • Meryl Streep introduces the ketogenic...